Evidence map›Paper›PMID 42260124›Full record

ArticleScientific reports2026

Factors influencing clinical research participation in ophthalmology: a mixed-methods study in keratoconus.

Nikolay Boychev, Kripa Shakya, Jonathan Kopel, Nandini Venkateswaran, Hajirah N Saeed, Joseph B Ciolino, Levi N Kanu

Abstract read
In one paragraph

Article in Scientific reports, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Nikolay BoychevDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA.
Kripa ShakyaDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA.
Jonathan KopelDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA.
Nandini VenkateswaranDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA.
Hajirah N SaeedDepartment of Ophthalmology and Visual Sciences, University of Illinois, Chicago, Chicago, IL, USA.
Joseph B CiolinoDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA.
Levi N KanuDepartment of Ophthalmology, Harvard Medical School/Massachusetts Eye and Ear/Schepens Eye Research Institute, 20 Staniford Street, Boston, MA, 02114, USA. levi_kanu@meei.harvard.edu.

Funding

Mass Eye and Ear-Vision Clinical Scientist Development ProgramK12EY016335 · NEI · MASSACHUSETTS EYE AND EAR INFIRMARY · PI Reza Dana · 2004 to 2026
$12.3M
Nanomaterials to improve growth factor delivery to the corneaK08EY037382 · NEI · SCHEPENS EYE RESEARCH INSTITUTE · PI Levi N Kanu · 2025 to 2026
$521k
NEI NIH HHS K08 EY037382NEI NIH HHS K12 EY016335
6 · The paper itself

Abstract

Keratoconus (KC) disproportionately affects young and underserved populations, yet clinical research participation remains unevenly distributed. To inform equitable recruitment strategies, we investigated demographic, behavioral, and perceptual factors influencing engagement in a non-interventional KC study. We compared demographic and socioeconomic profiles of patients solicited for participation in a non-interventional clinical study involving the laboratory analysis of excess tissue produced during a corneal cross-linking procedure. We conducted structured telephone surveys of participants and non-participants to assess barriers, facilitators, and attitudes toward clinical research. Here we show that, compared to participants, non-participants of the non-interventional KC study were older (33.2 ± 10.3 vs. 27.6 ± 7.3, p = 0.001) and predominantly male (90.2% vs. 64.8%, p = 0.003), while socioeconomic indices did not differ significantly. Prior clinical research participation strongly predicted future willingness to participate (p = 0.01). Key barriers included concerns about side effects, insurance copays, and job flexibility. Facilitators included transportation assistance, provider-led information sessions, and work absence documentation. Despite participants and non-participants sharing similar preferred language profiles, non-participants were significantly more likely to report availability of translated materials as important interventions (p = 0.04). Demographic variables alone did not predict participation. Behavioral and contextual factors, rather than fixed demographics, shaped clinical research engagement. Strategies such as personalized provider outreach, logistical support, and culturally tailored materials may improve recruitment and retention in KC clinical research; supporting participant-centered frameworks that address practical needs and readiness to engage, particularly in underserved populations.

Indexed as

Biomedical ResearchKeratoconusOphthalmologyPatient ParticipationAdultCorneal Cross-LinkingFemaleHumansMaleMiddle AgedPatient SelectionSurveys and QuestionnairesYoung Adult

Identifiers

PMID42260124
PMCPMC13486715

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.